First Follow Up and NG Tube Update

Hope had her first follow-up appointment this week at the Clinic.  It started with a chest x-ray which was fine.  After that she had an echo...after she had her breakfast.  I tried to explain to the ultrasound technician that she had just finished eating and she might want to wait a few minutes before she started.  She decided to go ahead with the echo and of course Hope decided to throw up her breakfast on her.  I hated that Hope threw up, but I wish the tech had listened to me.  After the echo I decided to feed Hope another bottle and we were able to spend 15 minutes letting her digest the bottle before Dr. Prieto came to see us.  I loved hearing the words "her echo looks wonderful".  I had been dreading seeing her cardiologist because we always seem to get bad news when we see the doctor, but this time was great.  I felt like my little girl was showing everyone how strong she is and how much God is laying His hands on her!  We also met with the cardiology nurses and her incision looks fine and it doesn't look like she has/had an infection at all.  All in all, the appointments all went really good.  After our appointments I went to step-down and spent a few minutes with Erica and Kylan.  Kylan looks great and it looks like he will be going home this week.  I am so excited for Erica and Paul...they are great parents and Kylan will be so much happier at home.

The pictures I am posting today are special because you will notice that Hope does not have an NG tube.  She has been pulling it out a lot lately and we are going to test her today and see how she does without it.  She will need to take all of her food and medicine by mouth and we will be able to leave the NG tube out.  She has been doing so well lately that I am thinking she doesn't need it anymore...and I am sick of replacing it.  It isn't nearly as hard as I thought it would be, but I just don't like to know that I am the reason my little girl is crying.  She hates to have it put back and I think maybe she will realize that if she takes everything from the bottle, she won't need it anymore.  It will make all of us much happier.

Please keep us in your prayers as we know every day we have with Hope is a miracle.  We have cherished every minute and realize that life is so precious.  There are so many lessons we have learned on our journey and so many more we will learn.  We hope our journey shows God's miracles in life and helps everyone embrace life more fully and cherish everyone that crosses your path...every minute of every day.